NATIONAL/INTERNATIONAL ORGANIZATIONS AND ADVOCACY
The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the 2.7 million people with epilepsy in the U.S. and their families. Epilepsy.com exists to inform and empower patients and families living with epilepsy.
American Epilepsy Society
The American Epilepsy Society promotes research and education for professionals dedicated to the prevention, treatment and cure of Epilepsy.
MotherToBaby, a service of the non-profit Organization of Teratology Information Specialists, is dedicated to providing evidence-based information to mothers, health care professionals, and the general public about medications and other exposures during pregnancy and while breastfeeding.
Citizens United for Research in Epilepsy (CURE)
Citizens United for Research in Epilepsy, is a volunteer-based nonprofit organization founded by parents of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications.
Epilepsy Canada is the only Canadian non-profit organization whose mission is to promote and support research into all aspects of epilepsy, and to create awareness and understanding about epilepsy through educational programs.
National Council on Patient Information and Education
NCPIE’s mission is to stimulate and improve communication of information on the appropriate use of medicines to consumers and health care professionals.
My Epilepsy Story
My Epilepsy Story is a forum to unite with ONE voice, women and children who are affected by this devastating neurological disorder.
Empowering Epilepsy was created by people in Cleveland, Ohio directly affected by epilepsy. While looking for support, there were limited resources outside the epileptologist’s office. Our goal is to create a caring community that allows people with epilepsy and their families to find active ways to manage their seizures and take charge of their lives.
HEALTH INFORMATION AND RESEARCH STUDIES
MONEAD (Maternal Outcomes and Neurodevelopmental Effects of Antiepileptic Drugs)
Most women with epilepsy have normal pregnancies, but appear to be at risk for problems during pregnancy (e.g., seizures, change in medications, depression, c-sections) and adverse outcomes in their children (e.g., thinking or behavioral problems). The purpose of this observational study is to establish the risk and determine the factors or contributions to those risks.
National Pregnancy Registry for Atypical Antipsychotics
The National Pregnancy Registry for Atypical Antipsychotics is dedicated to evaluating the safety of atypical antipsychotic medications that may be taken by women during pregnancy to treat a wide range of mood, anxiety, or psychiatric disorders.
MGH Center for Women’s Mental Health
MGH Center for Women’s Mental Health was designed in an effort to provide scientifically sound and clinically useful information to caregivers and patients at a time when the field of women’s mental health is quickly evolving.
Seizures.net publishes recent developments in the treatment of epilepsy. The web site provides information to the public and health care professionals.
Eurap International Registry
Eurap International Registry was launched in Europe in 1999 by a consortium of independent research groups and later extended to several other nations worldwide. The aim is to collect data on the risk of antiepileptic drugs during pregnancy and share it in an international registry.
UK Epilepsy & Pregnancy Register
The UK Epilepsy and Pregnancy register was established in 1996 for pregnant women in the UK.
Australian Pregnancy Register
A voluntary Australia wide registry of patients who become pregnant while taking an antiepileptic drug.
NIH Clinical Trials Site
Links to disorder-specific clinical trials.
MEDLINEplus Health Information
MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations. Preformulated MEDLINE searches are included in MedlinePlus and give easy access to medical journal articles.
Already a participant of the North American AED Registry and took valproate during pregnancy? Registry collaborators would like your help in a new study investigating the effects of valproate/Depakote.